This will be long, too hard to shorten it. Drat, too long for medhelp.org so I'll try posting it in 2 or 3 parts. Is that possible?
I have a bad case of hives and need help. I can't live the way I am, continual breakout and other symptoms and too much Benadryl (most days 200-350mg per day). This level of bad hives+symptoms and heavy Benadryl has been going on since mid November 2007.
It has gone on so long due to waiting to hear from health insurer if I'm insured (took weeks to get back to me; I'm not insured) and due to weather (storms).
My locale is Southern California, mountainous area at 4500 feet.
When I look back, my condition started about September of 2007. My hands and feet would itch, and itch so much that it started waking me and I'd have to scratch. Then days without itching. Then more itching.
Then in early October I got itchy angioedema in hands and feet (didn't know it was angioedema at the time). Big swollen hands, impossible itching, and I began taking Benadryl for the first time. In mid October 2007 I had my first hives break out. From hands starting up arms and from feet starting up legs, then calmed down about 2 weeks. Then starting November 14th hives in many places and few days without hives and symptoms, and medications.
Hives on arms, trunk including chest and neck, legs, hands, feet, and into my face sometimes. Included were, and are, scary symptoms of lips, eyes, and brow, and nose swelling, and what I call "fuzzy face" or the feeling of cobwebs or hair on my face, sometimes on other parts of my body, too. The hives became terribly itchy, burning, stinging, prickly and breaking out all over, and a sense of trouble breathing and the swelling symptoms.
I raced to a nearby rural clinic. I was miserable and agitated and just over the top with suffering and fear about stopping the itching and my breathing. I had taken Benadryl that day, and in the waiting room took another 50mg, and told the doctor when she examined me. She gave me further treatment of 50mg of injected Benadryl (Diphenhydramine) and monitored me for a few hours. Symptoms reduced, but by the time I drove home 30 minutes away I was back in the same boat of bad symptoms.
The rural doctor had prescribed steroid (prednasone, 60mg per day, with weaning off it gradually), Benadryl, albuterol inhaler, and an anti-depressent (I still haven't filled or used an anti-depressent). In the next week two of us couldn't get enough relief for me, the hives never disappeared, though did "smear", but were still raised smears on inner thighs, arms, legs, and breaking out anew sometimes. And symptoms of burning and fuzzy face and such. By a week after that rural clinic visit I was racing to an allergist for relief.
I had my first allergist appointment (ever) Nov. 20th. The allergist said stay on the Benadryl, but also take daily loratadine (10mg), Xyzal (levocitirizine, 5mg), Singulair(Montelukast Sodium, 10 mg), the prednisone, and Zantac to calm the stomach from the drugs and it also has an antihistamine in it, and use the albuterol inhaler when needed. And to gradually reduce the Benadryl (which is mind numbing).
He also advised a strict diet (mostly rice and products made of rice, also potatoes, lentils, and a few things more, but very little), and I followed that diet for 2 weeks (at Thanksgiving time I'm sorry to say). But I had hive problems the entire time, and not made worse as I introduced my old foods back into my diet. From all evidence I don't have any food allergy. Also, we changed our products (dishwashing soap, bath soap, detergent, etc.) and I didn't get exposed to cleaning chemicals and etc., but still the hives and symptoms problem. So from all evidence I also don't have an allergy to any products.
Our home, apart from having been too dusty for 2 years, is very basic and neither of us likes perfume smells in the home or on ourselves so the products we do typically buy are perfume/scent free.
I also moved out of our home on Thanksgiving Day, to get away from the dust there and to give me a chance to recover. Thankfully neighbors gave us their vacation home to use as needed until Spring 2008 (unbelievably wonderful of them and we can never thank them enough!).
Since my Nov 20th allergist appointment I did reduce the Benadryl but learned that the other drugs didn't help enough or maybe even at all. I'd have symptoms and maybe every week I'd have a new scary breakout and have to go back on high dose Benadryl. Sometimes the Benadryl has calmed the hives and I've had a few days without taking Benadryl, but still some symptoms like burning skin or fuzzy face, and in any case I've mostly had to stay on high dose Benadryl.
I believe this health problem began because our house got too dusty with cat dander and house dust . For about 2 years I had breathing problems, and this was a period when our house wasn't being dusted or vacuumed enough. For 20 years we had always lived in a clean and well dusted home but had some circumstances in the last 2 years and our house became very dusty. I also wonder if a dental problem isn't exacerbating the reaction or even causes the problem.
(to be continued in next posting by me...)-------------------------
(part 2 of Bad Case's health situation.....see above for part 1....)---------------
I'd had a couple of days of lower dose Benadryl lately, about 100mg per day, and was able to go from 10pm Sunday night to 8am Monday morning without a breakout and without concerning symptoms. I was feeling good that Monday, January 14, 2008, and took a short walk to a local library. I'd only had a few outings in 2 months and was feeling so good that I didn't bring my inhaler or my epi-pen with me, no drugs at all, just feeling good and enjoying a nice crisp day and a short walk. All went well, but after about 40 minutes in the library my post nasal drip became a river and I had trouble breathing (anaphalaxis?) and had to rush outside and try and breathe and call my mate to come and get me and bring inhaler, epi-pen and Benadryl.
This time I had respiratory symptoms first, not hives first, and the hives didn't show up until the next day. That whole day the 14th and the 15th and even into the 16th I had terrible post nasal flow and breathing problems. I was so afraid that I slept upright, when I could sleep. I had to up the Benadryl considerably. And I was now afraid to go anywhere, into any buildings, vehicles, etc.
On the 15th I got blood tests done (CBC, Sedimentation rate, T3 Free, Comp panel, and also a urine reflex test). On the 16th I saw my allergist again, and on the 17th a dentist and phone discussion with my allergist about results of blood tests and results of seeing the dentist.
Blood tests show no infection or disease, and everything except my hemoglobin and high sugar (121) looks good. I suspect the hemoglobin was low (10.2) because I have a history of heavy menstrual bleeding and times of anemia (but have never had a prescription for those times, just once in awhile would take iron on my own). About the sugar, well, because I'd just had such a rough time beginning that Monday (the library episode) I wasn't eating much by the next day, the day of the blood tests, and may have consumed more sugar than is good for me (though it's possible that the high sugar indicates diabetes). In any case the allergist is not concerned about disease or infection.
But the dentist did find gum infection and wants to do periodontal work (lift up the gums, clean, suture back into place as necessary). He'd rather do that than prescribe antibiotics but I'm desperate for relief of my hives condition and asked for an rx. He prescribed 1500 mg of amoxicillin (1 tab 3 times per day) and 750mg of metronidazole (1 tab 3 times per day) and I've been taking that since Thursday January 17th. He also recommended removing a crowded wisdom tooth, a tooth that might have associated infection or even an abscess.
At my allergist appointment last week, Wednesday January16th, I was suffering and crying and worried about my condition and breathing and exhausted from 2 months of it, and he gave me 2 shots of steroid (1 depomedrol=20mg, 1 kenelog=30mg). He said give the antibiotics a chance and we'll know soon if they're helping.
I had a few days of less Benadryl but the symptoms have been escalating and so so has the Benadryl. Yesterday (1/21, Monday) I took 200mg of Benadryl. I've had 150mg already today and expect to take at least 75mg more before the day is over.
I think the reason I continue to have symptoms is because what I'm allergic to makes it's way to my exile-home. When my mate visits he first changes clothes and washes hands and face, sometimes even showers before coming over, but I think he must have some dander and/or dust on him from our home (and from our cat).
We've done many things to try and resolve this health problem enough. Including purchasing 2 good air purifiers, new mattress pad, and my mate has been cleaning our home and keeping the dust down. But I appear to be in a hypersensitive state anymore. I've always had some allergies but not enough to ever seek medical treatment for them. Even when I'd have trouble breathing around cats I'd just take an actifed and mainly that would do it. But in the months prior to my first hives outbreak I had noticed that taking an occasional actifed didn't seem to be working well enough when I went to the homes of others who had cats and/or dust. Would I be correct in thinking that this is because I was overdosing on the allergens (cat dander and dust) at my home and my allergy was becoming more serious and now required more than a tablet every couple of weeks or months?
My allergist has proposed that I get a RAST test (seems too dangerous to do a scratch test on me) and in the meantime wants to begin acupuncture treatment. I'm not hostile to alternative therapies, but I've never had acupuncture and can't believe that it would make a difference for my level of severe reaction. I'll do it, and soon, but I hold little hope of it helping at all.
(part 3 of Bad Case's health situation.....see above for parts 1 and 2....)------------
My allergist also said get the teeth infection+pain taken care of soon. And I will (when the weather permits). We had decided against a sinus x-ray to check for sinus infection because I don't have symptoms of that (I don't have yellow mucus, mine is clear), but I may get those after-all. And I may get a chest x-ray to look for chest infection.
Note that all these tests add up to high cost for us and without health insurance and with financial difficulties otherwise, we have to watch costs where we can. But I need to get back to living my life and I can't do that not living at home, having serious trouble with symptoms, and being on high dose Benadryl. It's a wonder I'm not asleep all day and night (I force myself not to be). I often can't drive (due to Benadryl). And I miss my mate, my cat, and our home.
My allergist also talked about immunotherapy (allergy shots; though I understand that 40% of Europe is now using allergy drops instead of shots, that sounds easier), but that takes awhile to work and who knows how well it will work in my severe case. The allergist says that though he's never seen anyone in my condition (constant symptoms, not responsive to non-Benadryl antihistamines) and my Benadryl high use he has had some success with acupuncture. So I'll try it soon, when weather permits.
Meanwhile I'm at the end of my rope. Any doctors out there who have seen my condition before? Anybody taking 200+mg of Benadryl (diphenhydramine) per day, with few days of low dose or no Benadryl? Anyone think this condition could be "caused" by my sore tooth/dental infection? Can anyone recommend a good doctor to see and what types of doctors (I've thought of allergists, immunologists, internists, dermatologists, infectious disease specialist and a diagnostic medicine specialist)? If you are a doctor I'm especially interested in hearing about my condition and if you've seen anyone with anything like it. If so, what were the root causes? And if you aren't a doctor I'm interested in any info you can share that might give me a golden nugget that helps improve my health. I need relief soon, this has gone on too long and with virtually no improvement yet. Please help me if you can
P.S. Please pardon my Benadryl daze, it's hard to even write this email let alone review and correct it for grammar, punctuation, spelling, coherency, etc.
P.S2 I don't take any other medications (a very occasional ibuprofen for migraine) than I've listed herein and until this hives condition hadn't been to any doctor or dentist in 7 years or more. We've always had health insurance until recently, and paid for it ourselves for many years (very expensive, in the last couple of years paid $1,500 per month!) but have had hard times financially and I hope this condition doesn't add too much to our growing debt. We never had debt our first almost 20 years together, always paid things off in full, always drove older cars and paid cash for them, and I paid my university student loans off 2 years early, but in recent years our entire picture changed and we are strapped financially.
1-23-08 Your hives started just about a month before mine did. I get them everywhere except my face. My lips do get a little swollen sometimes though. My hands and feet just recently started getting them about two weeks ago. I've been doing much research on the internet and am exploring all possibilities. I've taken all steps in the process of eliminating different possible allergyns but can't figure it out. I went to a friends house in Santa Barbara on superbowl weekend and started breaking out there at about 8 P.M. Something about the night time hours that sets them off. I am currently perscribed Atarax which worked for about the first two or three days but the hives came back although not quite as bad so I continue to take it at about 7 P.M. every day so I won't break out so bad at night which is when I get them the worst. I went to the health food store and bought some Vitamin B12 and Betaine Hydrochloride. Hives are sometimes caused by the bodies inability to absort Vitamin B12 through the stomach. Betaine aids in the digestive process. This is my second day taking these and the only difference I've noticed is that I don't get the hives on my torso as bad as before although I am still getting them badly on my arms and legs. I'm going to continue with these two supplements on a regular basis in hopes for some improvement. My older brother has this conditin where he can't absorb Vitamin B12 through his stomach and gives himself an injection every month. He never had hives though. I have an appointment with an allergyst next week but I feel like it's something internal like a deficiency or gland or something. I'll keep you updated.
hi, Im sorry to hear your suffering just as I am. I've had different health issues through my life but this is probably one of the worst things I've ever experienced. It could drive you crazy.I dont have any answers for you and I posted whats going on with me above under allergic to nicotine? but just wanted to let you know your not alone. Ive seen several different types of doctors when I was in the hospital and they did several tests and they were all normal other than I have severe angiodema (not hereditary).I am on prednisone all the time and tried several antihistamines and mixes of antihistamines but the only thing that seems to work for me is also the benedryl. Good luck . Maybe between us we'll find some answers . I'll post again if anything changes.
My name is Kate i am 22 and I'm having some trouble.
About 1 month ago I got my Gulbladder out. in the hospital for a week all that.. last wend my upper lip swelled, i took a benadryl and went to bed thursday morning i was fine went to work (animal hospital) im a vet tech, I worked at night till around 9 and on my way home my tonuge swelled just one side boy did it hurt it also scared me alittle because my throat hurt it was hard to swollow, i went home and took 2 benadryl went to bed early and the next morning it was gone. friday night, I went to work in the morning for about 2 hours and then left for a trip to new york city to see a concert. during the concert my bottom lip swelled and i got bad stomach pains, went to the hotel and took 2 nitequills the next morning my stomach still hurt but my lip was down. walked around new york for alittle and went home saturday night i had the same stomach pains but they were 10 times worse and in the same spot before my surgery, i took a percocet which put me to sleep. sun there was still pain but not bad, stayed home and did nothing. mon i actually felt ok went to work and was fine left around 3 and i had a Dr appt to tell them everything that was going on. while there my dr saw that my ringworm that i had about 2 months ago is back and in the same spot, also she said that the swelling of my lips, she has no idea what it could be, she thinks its an allergic reaction, I told her there is nothing new im takind nothing new im using i can't figure it out. she suggested that i try using clariton during the day and to see how that helps she also told me that the pain might be from a gulstone they missed in my bile duct she wanted to take bloodwork to see how that looked. i am on effexor for depression and thyroxin for my thyroid. she said everything was fine, but in about a month she was going to recheck my bloodwork becasue my iron was alittle low and i might need iron pills. thats all fine but tuesday i got home from work and again tounge swelling and now hives yayyaya right.. no so more benadryl and off to bed. by wend i have had about enough i get the lip swelling and the hives i take 3 benadryl in the morning and lay in bed i call the Dr they have no idea what it is and dont know what to tell me. then by dinner time i get hit with the shakes and a fever of 101.5 also i have alot of pain in my feet hands and now my eye lids they're just tender when i touch them it hurts. and i seem very week my whole body hurts. while this is going on for about 3 hours i also loose my voise. around 10:30 my temp seems normal i actually get hot. and i get hives and alittle swelling in my lips. i try to sleep it off but i am soo itchy. i keep waking up. finally this morning i have hives and lip swelling no work yesturday or today and i just to 2 allergy/cold pills.. also i have had diarrhea since tuesday.. I HAVE NO IDEA WHAT THIS IS I NEED HELP!!! PLEASE!!!
Okay, I'm back with good results!! I went to an allerigist and went over all the possibilities to no avail. So he decided to draw some blood to see if he could find any problems but in the mean time he told me he would try to give these hives a zap with a heavy dose of Prednizone. He had me take (6) 10 mg. tablets there in his office and sent me away with a prescription for 36 more tablets. My first dose in his office was at about 2:00 P.M. which kept the hives away the rest of the day and that night. I get them worst over night so I decided to wait until about 10:00 P.M. the next day to take me second dose and by that time I had started to break out again. I took six more and woke up with no hives. So the schedule he put me on was days 1 and 2, (6) tabs. Days 3 and 4, (5) tabs. Days 5 and 6, (4) tabs. Days 7&8, (3) tabs. 9 and 10, (2) and 11 and 12, (1) tab. I have noticed a huge improvement to the point where they are almost all gone. I've been off the Prednizone now for 6 days. I sometimes get a few light hives on my shoulders and thighs but very light. I treat these with either an Atarax or an over-the-counter allergy med (Kirkland brand). This has worked for me and I wish all those afflicted to have the same positive results. I'll get back with everyone if anything new comes up from my blood work.
Hives are red, itchy welts or swellings on the skin that often come in clusters. They sometimes have a light red or pale center surrounded by a darker red area around the borders -- a marking resembling tiny bull's eyes -- but may simply look like large red circles. In doctor speak, hives are known as "urticaria."
Hives can appear anywhere on the body, cropping up either in one small area or covering large patches of skin. They most often occur as part of an allergic reaction. No one lesion lasts more than 24 hours, but new ones may continue to appear until the condition resolves. About one out of four people will get hives at least once in their lives.
Although hives can be highly uncomfortable to have, they are relatively harmless. Hives usually appear suddenly and go away on their own in a matter of days, hours, or even minutes. Chronic hives, however, can last for six weeks or more. Certain people have recurring outbreaks of hives for months or even years, and it's sometimes difficult to pinpoint the exact cause.
Hives are often caused by a hypersensitivity to:
•Foods (commonly eggs, shellfish, nuts, berries, dyes, or other additives)
•Drugs (any drug can touch off an allergic reaction, although allergies to penicillin, sulfa, and aspirin are especially common)
•Pollens and plants (nettles, poison ivy, poison oak, and so on)
•Insect bites or stings
•Exposure to heat, cold, or sunshine
Comfort is the main goal of treatment, since most hive outbreaks are relatively minor and short-lived. To soothe itchy skin, try cold compresses, calamine lotion, a cool shower, or a tepid bath with a few tablespoons of cornstarch (the kind sold in drugstores) thrown in. Try an over-the-counter antihistamine to reduce your body's response to the irritant and to relieve pain. Ask your doctor if you should take antihistamine pills.
Hope this information helps you.
sqf i have the same problems you have i have had my allergies belive me or not for about 15 years and its scary i ended out in the emergency 2 times because my tung got so big i was having problems breathing, now im on prednisone and they are normally the best now they only work just a bit . i know what you are going thruits been to long for me the cold gives me hives dust highly allergic to LATEX that is my number one LATEX but there is other thing and my allergist said i will probably never find out. i will keep checking this site to see if anybody found out some thing new GOOD LUCK
My symptoms came fast and out of no where.
After 6 months of being swollen, in one month i went from 160 ( i am 5'11) , to 204 Lbs!
I realized i had a bunch of things that flared me up
The number one thing is NIGHTSHADES, please look it up!!! its very common but people dont realize they have an allergy to them
Nightshades are a family of veggies/plants- They include:
-SOY!!! big offender, including tofu ( almost everything ina box or can has soy in it)
- Lentils and beans(all of them) kidney,black,pinto, chickpeas aka hummus...and peanuts
there are more please look it up. I am now also allergic to tylenol and aspirin and ibuprofen
I started gettin hives about a year ago, first felt bums on my head and never paid much atention until I got two on my chest, than they faded away to come back in a serious manner, and consantly since june of last year. They come and go constantly as they fade new ones come out, I get them in my head, neck, face, chest, arms, and sometimes in the legs, the more severe happen in the chest area. I was reading your story and can understand, Doctors do not have any answers and will run tests on top of tests without being able to pinpoint anything, it is costly........I lost my job due to this problem and don't know what to do other than praying, I also lost my insurance and am hoping that God answers my prayers. I never thought of this but now knowing there are others out there, it makes me realize how much we take for granted, so I pray for you and all who are going through this unfortunate illnness. I am 49 and this hit out of the blues.............................
I am looking through all the posts on hives seeking answers as mine have broken out badly again and like all of you I have tried everything, any new ideas out there from folks who got rid of their hives ,mine are mostly around my neck brought on after Dental work, and Penicllin 15 months ago
If you google hereditary angioedema gives a breakdown of all the different types and root causes of angioedema. However, it angioedema is accompanied by hives then it is either idiopathic (just means weird) , or can be caused by thyroid dysfunction, or it is allergic. One of the side effects of adderall (amphedamine salts commonly known as speed)is angioedema. I have had multiple bouts of angioedema following any inflammatory response including sun exposure, latex exposure, eating tomatoes, peppers, potatoes, paprika and even putting chamomile tea bags on swollen eyes. I was having breakthrough bouts of angioedema even with benadryl,zertec, xantac, and hydrozazine. It is important to figure out which kind of angio edema you have. If you have hives or angioedema that goes on formore than a short time then it is idiopathic. If the doc kept you on potatoes then no wonder you didn't improve.
I forgot to mention that I discovered that night shades were part of the problem when immediately after harvesting and eating our luscious tomatoes I broke out in hives and angioedema. Remembered all the things that give me ingestion including spaghetti and anything with tomato sauce. Since I have quit eating those things I have had only one episode of hives and no angioedema. However I also stopped my adderall and my antidepressant. I Celexa.
I know this isn't respected by the medical establishment but if the MDs can't help you, try a naturopathic physician. The are trained in nutrition and looking for root causes for metabolic diseases. Be sure you go to someone who attended one of the reputable Naturopathic Medical Schools. Now that I know what triggered these attacks, I'm going to see a naturopathic physician to see if we can't rebalance my immunesystem and restore my physiology to its optimal state for my age.
i havent seen anyone mention HAE.....read about it! there is an association...kinda rare....i have had hives for 16 yrs..a bad case...i have HAE (inheritive angio edema with chronic hives)..mine was triggered with dental work! there is a test for HAE! please read on the subject.
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